Chronic Fatigue Syndrome: Too Healthy To Be a CFS Voice?

I have taken my place amongst the creatures of fabled lore -- the Loch Ness monster, the unicorn, the Yeti ... Yes, I am highly controversial and hotly disputed. I am recovering from Chronic Fatigue Syndrome.

Some say I don't exist. Some say I can't exist. There are a number of different schools of thought on this position.

Some say there is no such illness therefore I can't be recovering from it.

Others say that there is no such thing as recovery from Chronic Fatigue Syndrome. That I am a cruel joke, taunting those who are sick with something that nobody with CFS can never have -- a life once again.

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Still others say that since there is no such thing as recovery from Chronic Fatigue Syndrome, that I must never have had it in the first place. I have read such things written about me, by people who don't know me, who have never met me.

It was a shock the first time but I don't take it personally now. And though I think it's too bad that they wasted their time writing about someone they don't know, on a subject they know nothing about -- meaning, me -- I can kind of get where they were coming from.

I am now in an interesting spot. I'm just not as sick as I was. I am able to have a life.

I still have my times of contending with CFS symptoms but they are so much less than they used to be. I'd compare it to someone with diabetes who mostly is fine, as long as they monitor themselves, and build in a few protections for themselves.

When I was very ill I couldn't write at all. I could hardly write my own name. Having to do anything with pen and paper -- or computer -- would exhaust me mentally and physically in under five minutes.

I would have to retreat to my bed, to vibrate there helplessly while the inside of my brain was like a tilting kaleidoscope or a runaway rollercoaster ride off its rails and slicing at all angles across the sky.

I was like a ship lost at sea, being tossed by storming waves and riotous gales.

I was certainly in no shape to report such goings on. It was taking all I had to survive it.

And that was all I was doing for a number of years. But things have changed dramatically since I was a vegetable.

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YES, you must stay involved and be a voice for this illness. you are what we need: a healthy person who can advocate for us. A lot of why we can't get more done on the advocacy front is because we don't have healthy folks who can do the work that needs to be done.

By the way, I had a 7 year remission once. Then the illness came back just as bad. And it has now lasted 21 more years. So do be careful.

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The medical establishment will have you believe that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is some sort of ‘mysterious illness,’ but it’s no mystery to me; CFS/ME leads to HIV-Negative AIDS, idiopathic CD lympocytopena (ICL), a clinical diagnosis that I possess.

How can the AIDS establishment continue on with a stale "it's caused by HIV" mantra when there are ICL cases cited in medical journals dating back to 1992? While millions of ailing immunodeficient CFS/ME patients get belittled and neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money.

How can it make any sense to anyone?

It's so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted. AIDS patients are simply more CFS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFS iceberg, and it's well-documented that HIV is not the cause of CFS/ME.

How else do you explain that there is no CFS/ME epidemic in the HIV+ population? CFS/ME does not discriminate. The answer is that there is; any otherwise perfectly healthy HIV+ person that is: 1) symptomatic, 2) is better on ARV's, or 3) is severely immunosuppressed (AIDS)...

...is yet another CFS patient.

Simply rename CFS, ME, and AIDS all to be "low natural killer cell disease" and everyone would very clearly see that:

1. Demand research funding parity for CFS with AIDS.
2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
4. Urge that AIDS organizations (like AmfAR) include CFS under their umbrellas so that CFS advocates don’t have to reinvent the wheel.
5. Demand that the White House, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS.
6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
7. Suggest that next December 1st be declared the first “World CFS/AIDS Day.”

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I'm sorry to hear about your relapse. I hope you come back up and out once again.

It is very true that what will work for one may not help another. I have been fortunate to have been able to find things that make a big difference for me.

Conventional medicine never helped me one whit. Naturopathy has been the saving of me.

I have to keep an eye on how I'm doing, all the time. I know another relapse could happen to me, as has happened to you, so I try to be careful.

Mind you, careful is much different now for me than it was a few years ago. I have gradually gone from being unable to work, to an 8 hour week, which over the last 2 yrs or so has increased to about 50 hrs a week.

The fact that I can do it at home taking breaks when I need them, makes all the difference in the world, and the fact that it was a gradual increase over 2 yrs was also, I'm sure, a big factor. I would not have been able to walk into such a work-day all at once without a crash.

I'd like to stay involved with CFS. I plan to do so. The questions, and the irony, do rise up from time to time though. Now that I am well enough to be heard, will people believe that I was ever really that sick?

I can't imagine ever walking away from the people who are still enduring what I endured for those years. I can't imagine not doing whatever I can to bring some relief.

At this point, what I can do is quite limited. I write here about CFS a couple of times a month and beyond that right now providing for my family takes all my time. At some point I hope to be able to do more for other chronics, try to help bring a voice to people who feel they've lost their voice long ago. I'll do what I can.

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Jody, I do believe recovery is possible in some cases. I got to the point I could work a 30-hour week job, sitting down, as long as I had some lay down time in the middle of the day. However, I went through a stressful period and then two bouts with flues. And I relapsed again. I pray your recovery sticks.

I also believe what works for one might not work for another. But I appreciate your sharing your treatment. For those of us who aren't seeing one of the well-known experts, we feel everything is experimental, and costly, by the way.

I would love to hear what freelance work you are doing. And I urge you to stay involved with CFS. I understand the desire to move on to living life, we really need those who really know the illness, but have energy, to get involved in advocacy or other efforts.

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I have talked over and over about my successful treatment but you are not the first person to ask this so I guess somehow I'm not making it clear enough.

I see a naturopath who has reinforced my low carb diet which handles food sensitivities and insulin resistance. I take vitamin B12 and vitamin D and omega 3 oil all of which seem to be essential for me.

I have monthly acupuncture. I take a tincture that contains antivirals, antibacterials, adaptogens and vitamins. I drink liquid chlorophyll. I have used nasal irrigation, and dry skin brushing. I drink water with lemon.

All of this information and more is on my website for those who want to read the articles there.

We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.